Calling all limbolanders-limbo check in 10/5/2010

[ShakespeareMama]

Hi. Just checking in quickly. I almost ate a doorknob a short while ago when a shock went through my foot, causing it to give out. Luckily, my hand beat my teeth to it.

I didn't call the doctor today but I had a good excuse. I was trying to register my son in school (this has been a 6 week process, already. Ridiculous.) and found out that I need MORE paperwork, still. Enough of that, though.

I need to sleep. Lots of "ow"s tonight.

I hope you are all well. Happy sleeping.

[zuzu20]

Ouch!!! Yes!!! Sleep no 1:20am pc time and still wide a wake darn legs and breathing won't let me rest!!! And i was so good with the diet and less caffinee and drink!!! I think it is going to be a long night!!!Good night eventually!!!

[minivanmama]

shakespearemama - I am glad that your hand hit the door knob and not your teeth. I know how getting kids in school can be.

I hope you can call soon. I hope you sleep well tonight. Lots of (((((hugs)))))

zuzu20 - I hope you did get some sleep. I hope tonight that you can sleep well. Lots of (((((hugs)))))


OK. I did not get anywhere. Oh my goodness i started to cry when i told him how hard it was to keep up with my family.

My neuro report was - I could not track his fanger. I could not stand when my eyes were closed. I was slow walking heel to toe. I have hyper reflexes on my right side. He did not say anyting about the weekness. Those are the only test that he did.

I asked my questions and gave him my sx and notes from the visit with my rhumey. That was when i told him about how hard it was to keep up with my family when my right arm and leg are i pain due to the spacticity. That was when i cryed and he could not really give me any ideas of how to deal with that. Then made my six month apt and went home.

I really was not think i was going to get anyting out of my apt. So i go on the 19th to see my rhumey and i am going to ask her what i can do when it comes to the pain. I think i am going to take her up on the botox shot.

So i am not going to scream and i am ok. I am now going get ready for bed and relax.

So good night limbo island and sweet dreams. Lots of ((((((hugs)))))).

[mjan]

OK. I did not get anywhere. Oh my goodness i started to cry when i told him how hard it was to keep up with my family.

My neuro report was - I could not track his fanger. I could not stand when my eyes were closed. I was slow walking heel to toe. I have hyper reflexes on my right side. He did not say anyting about the weekness. Those are the only test that he did.

I asked my questions and gave him my sx and notes from the visit with my rhumey. That was when i told him about how hard it was to keep up with my family when my right arm and leg are i pain due to the spacticity. That was when i cryed and he could not really give me any ideas of how to deal with that. Then made my six month apt and went home.


What?? He did NOTHING for you? No pain med or spasticity help? Like Baclofen? GEEZ~!
Is this an MS doc? Doesn't your Rheumie think you DO have MS??

I am so sorry.. gentle HUGS my dear. Wish someone, like your hubby could go WITH you.. to ADD to what you are trying to say. But then maybe he is just inept!!

GET ANOTHER doctor!!

Hugs my dear one~

Jan

[zuzu20]

minivanmama I know the frustration I got the same kind of thing can't really do much about the keeping up. Just got to go with day by day now. Its soooo frustraiting to just sit back. I couldn't track my eyes either. I have a vision field test next week. I can't see the left side and I am always walking into the doorways.

Any way I never did get any sleep my chest is bothering me can't get breath and now have a fever 100. so looks like another long night. I don't know what is with the fever it's related to a relapse. I seem to have trouble sleeping during these times. But at least I can take it easy during the day.
Good news is our garage got cleaned out today of old equipment that was my dads. It took over the entire garage. well with planning a move in the next 3 years it was time to clear everything. Every thing went it's sooo cool to see the floor.

[jumpinjiminy]

I would have cried too, MVM, especially after leaving. You need a doc that cares. You don't have to suffer needlessly. I can't believe he didn't give you something for the pain and spasticity. Seeing my neuro in a new light now after hearing so many stories like this here. I had one spasm that had me panting like a woman in labor for 20 minutes, and complained of having trouble walking because of the leg spasms, and he wrote out a script for baclofen. No diagnosis needed.

I'm so sorry. You need a new doc.

Saw mine today too. He increased the baclofen back up to 15 mg/3x/day, and I could have jumped for joy. He said he eventually wants me to go off of it, but not yet. I think he'll have to pry it from my cold, dead hands. It's getting rid of tremors I've had for 15 years, along with jumpy vision, ringing in the ears, muscle spasms and paresthesias.

He was not impressed by the new discoveries on the echo and didn't see how they could be playing any part in what's happening. He's ready to move for a spinal tap, but deferring to the infectious disease doc on what to look for with that test. He has no idea what to do about the fever.

Zuzu, I have one too. It goes up above 100 for a day or two, then below for several days. It may spike once or twice in between. But the long stretches of two to three days with steady or spiking fevers are always followed by new and/or worsening symptoms.

Apparently, that's the most puzzling thing about this to all of them, as MS doesn't produce fevers according to the medical community.

[minivanmama]

TGIF!!!!!

mjan - He is a MS neuro. I do take baclofen but can't take a high doese. I take 10mg in the morning and 10mg at night. I also take gabapentin 100mg twice a day.

Yes my rheumie and GP think it is MS. He is waiting till he finds what he is looking for before he will do a MRI and a LP. I have seen this neuro for 2 years and he has found that this thing has a relapse and remitting pattern. He is just not going to move till he is good and ready.

My DH goes with me he has to drive. It takes a hour to get to the neuros office. I can't drive that far with my leg. He did talk with the neuro also.

My next step is to talk to my rhumie. I know that she wants to do the botox shots and i am going to do that and talk to her about the neuro. I will see her on the 19th.

Thank you for the (((((hugs))))) and for always being there.

zuzu20 - I know cleaning out the gargae was a big task. Good job on getting it clean.

I am so sorry that you have not had a good night sleep. Bless your heart. I know you must be sleepy. I hope that tonight will be a good night and you can get some good sleep.

It is frustrating. I hope your vision test will go well. I have had that test and i did ok. I found it hard to do. I hope you eyes will get better. Lots of (((((hugs))))) and thank you for thinking of me.

jumpinjiminy - I am so glad that your visit went well. I am so relived the hear that. I am so glad that the baclofen is working so well. I can understand not wanting to let it go.

I am glad that he wants to do the LP and is letting the doctor know what to look for. I am sorry that he could not help with the fevers. It sounds like your neuro is doing what he need to do to get answrs. That is great.

Thank you for thinking of me. I am going to talk to my rheumy before i do anyting. I am going to take her up on the botox shots to help with the spasticity.

Lots of (((((hugs)))))


Thank you everyone for your support. I am going to talk to my rheumy before i do anyting. I always talk to her because she has help so much with this DX road that i have been on. I will see her on the 19th. I am going to ask her the same questions that i asked the neuro.

I am frustrated and but i am ok. I am so glad that i have y'all to support me. Thank you from the bottom of my heart.

Have a good weekend limbo island and don't over do it this weekend. Lots of (((((hugs))))).